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1734603 tn?1310425995

Bizarre Symptoms With No Diagnosis. PLEASE HELP!

For over 6 months, I've experienced some bizarre symptoms which are probably related.  There is no supposed cause, even after I've had a CT scan, an EEG and visits with two neurologists.  They've found nothing wrong (ie No brain tumor, no meningitis, no poison, no neurological abnormalities).  I know for a fact that all these things are real and have happened to me.  Family and friends have seen my symptoms in action.  I just need to know what I'm dealing with and how to make it better.  This is beginning to affect my quality of life, and I know I could have it much worse, but I still don't want to feel like this.  These are the symptoms I have and how they manifest in me.

Twitching/flailing/tics/possible partial seizures: This comes on without warning and can be made worse by anxiety and agitation. It's always painless. It's worse on the left side of my body, but may affect my whole body.They last from a few minutes all the way to several hours (but that's very rare). I often feel the need to slam myself onto my bed and flail my arms/legs, but that has yet to prove helpful in relieving this. What I mostly experience are moderate twitches and wobbly moments: much like I have vertigo, but had not been moving.

Staring/Spacing: I stare at random, and I see everything in front of me, but it doesn't register that I'm looking at anything.  I was staring at a blanket and pillow on my bed a while ago, but they weren't a blanket and pillow- just a fuzzy pink thing, a smooth white thing with a greenish blue thing behind it (my wall).  

Weakness/numbness/spark-like pain: This is worse on my left side especially in my lower arm/hand. My muscles feel abnormally weak: weak to the point where I don't want to pick anything up because I can't get a strong enough grip and can't judge the weight of the object. When I regain enough feeling, I get these little shooting pains starting from the inside of my elbow and ending at my fingertips. They feel similar to the little zap one gets from static electricity. Also happens on the left side of my neck, jaw and back.

Dizziness:I turn my head and I feel it a few seconds later. My head often feels heavy and is hard to hold up. At worst, my head seems to be drifting away from my body.

Left leg wobbles/jerks while walking: This doesn't throw off my coordination very much and isn't painful, but it's like I'm balancing on one of those exercise balls with a flat bottom. I have yet to fall, but I don't know when this will come on, how bad it will be, or when it will go away.

Forgetfulness/Short-Term memory loss and confusion: This could be a result of my ADHD, but I often forget what I was saying or doing right as it's happening. I may remember after a few seconds, a few minutes later, or just forget what I was doing and move on. I have a hard time communicating during this- I will say something totally off topic and/or have difficulty finding even simple words. I occasionally say things unrelated to the task "I need to find my kitchen" (said once when I was looking around my house for my cell phone).

Fatigue, even after activity for relief: I get hit with massive waves of fatigue, and despite stretching or sitting up, I need sleep. My eyelids drop, I fight to keep them open, but fail. During these "naps" I'll be out for an hour (often longer) and upon awakening am still fatigued.

Unusual headaches: These are not what most would think of as headaches. They're not so much sharp pain as they are squeezing pressure. I get a dull aching, (sometimes with a moderately sharp throbbing pain), primarily on the left side of my head (from my brow-bone to the base of my skull). It feels like my head's in a vice, but am only squeezed enough to feel pressure and not extreme pain. Often feels like my head is rushing/full of liquid, and it's about to burst.  These ccasionally affect both sides of my head: I feel like a huge hand is wrapping around the back of my skull and squeezing forcefully.

Hypersensitivity: I have acute senses when compared to most people (my vision is the only exception). This will become far worse when I'm stricken with a headache. Example: Right now, I have one of these headache things, and the light of my computer isn't bothering me, but the sound of typing is horrifying.

Feeling the need to be squeezed/crushed: This one is fairly new: I have times where I will bind myself inside a blanket or bed sheet, and still feel like my body has no gravity to hold it together. I've asked my dad to give me bone-crushing (by regular definition) hugs/squeezes, and I feel no better. I would do anything for relief of this, even let my roughly 220 lb dad walk on my back.

Significant decrease in appetite: I wouldn't mind this so much, but I never want to eat anything anymore.  I only eat when my stomach is clenching up into my throat, my tounge and fingertips feel tingly and I feel as though I'm going to faint.  At the worst, I feel too nauseous to eat anything.  That has become a "normal" thing for me recently.  

Left side of mouth/lips seems to be loose, may droop: Another new-ish thing. I notice this only sometimes, but when I do, my lips feel like they fit more loosely on the left side of my face. I have taken pictures of this, and I look like I received Novocain and am still trying to regain feeling.

I am a 21 year old female who has been previously misdiagnosed with (and thus, uneffectively treated for) Bipolar Disorder and Borderline Personality disorder.  I am now being treated for ADHD and related anxiety/depression.
4 Responses
Avatar universal
Hi there. Apart from Attention deficit hyperactive disorder, ADHD, you need to be investigated for multiple sclerosis by your neurologist. MS is a chronic demyelinating disorder also. MS is a chronic demyelinating disorder where the disease phase is characterized by active phase and remissions. It has multiple symptoms and signs and is a diagnosis of exclusion. The symptoms of multiple sclerosis are loss of balance, muscle spasms, numbness in any area, problems with walking and coordination, tremors in one or more arms and legs. Bowel and bladder symptoms include frequency of micturition, urine leakage, eye symptoms like double vision uncontrollable rapid eye movements, facial pain, painful muscle spasms, tingling, burning in arms or legs, depression, dizziness, hearing loss, fatigue etc. The treatment is essentially limited to symptomatic therapy so the course of action would not change much whether MS has been diagnosed or not. Apart from clinical neurological examination, MRI shows MS as paler areas of demyelination, two different episodes of demyelination separated by one month in at least two different brain locations. Spinal tap is done and CSF electrophoresis reveals oligoclonal bands suggestive of immune activity, which is suggestive but not diagnostic of MS. Demyelinating neurons, transmit nerve signals slower than non-demyelinated ones and can be detected with EP tests. These are visual evoked potentials, brain stem auditory evoked response, and somatosensory evoked potential. Slower nerve responses in any one of these is not confirmatory of MS but can be used to complement diagnosis along with a neurological examination, medical history and an MRI in addition, a spinal tap. Therefore, it would be prudent to consult your neurologist with these concerns. Hope this helps. Take care.

Avatar universal
Hi.Please present your case to Prof.Dr.Garth Nicolson at Autoimmune Disorder Community forum(International,Experts)
1734603 tn?1310425995
I have posted this same message in four different boards, and MS is coming up most often.  I will definitely be looking into it as soon as possible.  Thank you for your help.
Avatar universal
I see you are in WI you might also want to try and see if you can get to the Mayo Clinic. You do not need a referal to be accepted here is their contact info:

You can either call or fill out the form on-line.

I hope you get the answers you need,
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